Department of Pediatrics, Division of Medical Critical Care, Boston Children's Hospital, Boston, Massachusetts.
Division of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, Boston, Massachusetts.
JAMA Netw Open. 2024 Jul 1;7(7):e2424626. doi: 10.1001/jamanetworkopen.2024.24626.
Pediatric advance care planning (ACP), which aims to ensure care is aligned with family goals and values, is associated with better end-of-life outcomes; however, ACP in pediatrics remains uncommon.
To determine the feasibility and acceptability of the Pediatric Serious Illness Communication Program (PediSICP) and explore family-centered outcomes.
DESIGN, SETTING, AND PARTICIPANTS: This cohort study was a single-group pilot study of the PediSICP in adolescents and young adults (AYAs; age ≥13 y) with serious illness, parents of seriously ill children, and interprofessional clinicians from April 2021 to March 2023 in a quaternary care pediatric hospital. Duration of follow-up was 1 month. Data were analyzed from January 2022 to March 2023.
The PediSICP includes clinician training preceding an ACP communication occasion supported by communication guides and a template for electronic medical record documentation.
Outcomes of interest were parent, patient, and clinician experiences with and perceptions of the PediSICP. Feasibility was defined a priori as at least 70% clinician intervention completion rates.
A total of 10 virtual trainings were conducted among 40 clinicians, including 27 physicians, 7 nurse practitioners, 5 nurses, and 1 respiratory therapist, and 30 trained clinicians (75%) conducted and documented 42 ACP conversations with 33 parents (median [IQR] age, 43 [35-51] years; 25 [76%] female) and 5 AYAs (median [IQR] age, 19 [17-19] years; 3 [60%] female) who completed the intervention. The median (IQR) conversation duration was 27 (10-45) minutes. Most clinicians (29 clinicians [97%]) agreed that they felt prepared for the conversation, and all clinicians recommended the PediSICP. Parents reported participation was worthwhile (27 parents [84%]), they felt listened to (31 parents [94%]), and would recommend the PediSICP (28 parents [85%]). Parents endorsed higher therapeutic alliance after the PediSICP intervention compared with before (The Human Connection scale mean [SD] score, 57.6 [6.4] vs 55.3 [7.8]; P = .03) and decreased anxiety immediately after the intervention (Generalized Anxiety Disorder-7-item mean [SD] score, 10.1 [7.3] vs 8.4 [6.9]; P = .003), which persisted at the 1-month follow-up (mean [SD] score, 7.7 [6.8]; P = .03).
This pilot cohort study found that the PediSICP was feasible, acceptable, and highly valued by clinicians and parents of children with serious illness. These findings suggest that the PediSICP may empower interprofessional clinicians and improve ACP with families of children and AYAs who are seriously ill.
儿科预先医疗照护计划（ACP）旨在确保医疗照护符合家庭目标和价值观，与更好的临终结局相关联；然而，儿科中的 ACP 仍然很少见。
确定儿科严重疾病沟通计划（PediSICP）的可行性和可接受性，并探讨以家庭为中心的结果。
设计、设置和参与者：这是一项单组试点研究，纳入 2021 年 4 月至 2023 年 3 月在一家四级儿科医院的青少年和年轻成人（年龄≥13 岁）、严重疾病儿童的父母以及多学科临床医生，随访时间为 1 个月。数据于 2022 年 1 月至 2023 年 3 月进行分析。
PediSICP 包括临床医生培训，随后是支持沟通指南和电子病历文档模板的 ACP 沟通机会。
感兴趣的结果是父母、患者和临床医生对 PediSICP 的体验和看法。可行性预先定义为至少 70%的临床医生干预完成率。
对 40 名临床医生进行了总共 10 次虚拟培训，包括 27 名医生、7 名护士执业医师、5 名护士和 1 名呼吸治疗师，30 名接受培训的临床医生（75%）进行并记录了 42 次与 33 名父母（中位数[IQR]年龄，43 [35-51]岁；25 [76%]为女性）和 5 名青少年（中位数[IQR]年龄，19 [17-19]岁；3 [60%]为女性）的 ACP 对话，这些患者完成了干预措施。对话的中位数（IQR）持续时间为 27（10-45）分钟。大多数临床医生（29 名临床医生[97%]）认为他们对这次谈话有准备，所有临床医生都推荐了 PediSICP。父母报告参与是值得的（27 名父母[84%]），他们感到被倾听（31 名父母[94%]），并会推荐 PediSICP（28 名父母[85%]）。与干预前相比，父母在 PediSICP 干预后表现出更高的治疗联盟（人与人之间联系量表的平均[SD]评分，57.6 [6.4] vs 55.3 [7.8]；P = .03），并且在干预后立即焦虑减轻（广泛性焦虑障碍-7 项平均[SD]评分，10.1 [7.3] vs 8.4 [6.9]；P = .003），这种情况在 1 个月的随访中仍然存在（平均[SD]评分，7.7 [6.8]；P = .03）。
这项试点队列研究发现，PediSICP 是可行的、可接受的，并且受到严重疾病儿童的临床医生和父母的高度重视。这些发现表明，PediSICP 可能赋予多学科临床医生权力，并改善患有严重疾病的儿童及其青少年家庭的 ACP。
